ME Association petition has been sent to Sir Andrew Dillon at NICE: M.E. is not a functional disorder

The most recent ME Association petition called on NICE to amend its proposed guideline on suspected
neurological conditions, and remove all reference to ME/CFS being a functional
disorder.

We wrote to Sir Andrew Dillon
last Friday, with a covering letter (below) and enclosed the final petition –
supported by 13,593 people – along with 199 pages of comments; such was the
strength of feeling shown.

Dear Sir Andrew,

Firstly, thank you for the recent
decision to fully review and update the NICE guideline for ME/CFS. It was a
very welcome development and, as registered stakeholders, The ME Association
and Forward ME Group (a collaboration of ME/CFS charities of which we are a
member) are very much looking forward to representing the patient community at
future meetings.

I am writing to you today in
support of the Forward ME Group submission as stakeholders in the development
of a new guideline for suspected neurological conditions. The draft guideline
currently includes reference to ME/CFS being an example of a ‘functional
disorder’ which the guidelinedefines as
a condition that is ‘emotionally generated’ and ‘which may mimic physical
disease’. This ‘functional disorder’ classification is then used as a basis for
advising health professionals to not refer patients with specific ME/CFS
symptoms such as deteriorating cognitive dysfunction for a neurological
opinion.

The submission sets out the
reasons why this description of ME/CFS is inaccurate and rather alarming –
especially as it is not reflected in CG53, the guideline for ME/CFS, and as
this disease is recognised by the World Health Organisation (in ICD10) and
Department of Health, as being neurological.

In support of this submission,
The ME Association launched a public petition for a period of two weeks, that
enabled people who are affected by ME/CFS to demonstrate their support that
this erroneous description and implied causation be removed.

The petition closed on 11th
October and was supported by 13,593 people – all of whom want to see all
references to ME/CFS being a ‘functional disorder’ removed from the new
guideline and/or ME/CFS removed in its entirety.

As well as enclosing the petition
for your reference, I have also enclosed 199 pages of comments – such was the
strength of feeling about this error – from patients, carers, family members of
the severely affected and health professionals working in this field, for
example:

“Having been a specialist
therapist for 20 years working with CFS/ME patients I can assure you that this
is not a functional illness.”

“This devastating disease has
destroyed my life and that of others I’ve met. Adding to that destruction by
denying the revealing international medical research highlighting the physical
dysfunctional processes and pretending it is psychological in origin is
heartlessly cruel.”

Neurology should be welcoming
people with ME/CFS and not trying to pass them off onto other specialisms,
especially when neurology can play such a key role in diagnosis and management.

We would very much like the
guideline development members, who are meeting to consider stakeholder
submissions and finalise the suspected neurological conditions guideline, to
consider the content and strength of feeling demonstrated by this petition and
in the comments, it attracted.

If NICE can again show that it
has listened to feedback from stakeholders, patients and their representatives
– as well as professionals working in the field – and correct the error in this
new guideline, we believe the decision will be as warmly welcomed by the ME/CFS
patient community as your decision to review the guideline for ME/CFS.

We would welcome an explanation
as to how this error arose and why, when NICE prides itself on consideration of
the evidence-base, no evidence was considered before ME/CFS was deemed to be a
‘functional disorder’ and referral of patients to neurology was decided to be
unnecessary.

Please show you have listened and
take on board this significant feedback.

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.